About – Page 7 – Tonotopics

September 1, 2020

Growing into an introduction

As with anything that you start, it is beautiful to see something grow. These random notes to you have also gone into different directions, and I finally feel that this blog needs an About page. This of course is something that I will then need to Google and set up, but let me at least write the damn thing first.

Tonotopics became a little castle in the sky when I thought that the things that challenge me may be challenging others. When I was diagnosed with hearing loss, I could not really find a lot of likeminded individuals struggling with the same thing. When I was going through my physical therapy for my vestibular issues I found many very academic articles but no one who actually said: “yes, you are 36 years old and cannot stand on one leg”.

I learnt that my hearing loss was to a large extent responsible for my anxiety, so I thought I would share some of my plans in that regard and soon I realised that this conversation might as well include the things that I love to do, like cooking and drawing, maybe a little bit of poetry.

I believe that this page will probably need to be updated more often than not, but my dream for these little notes of mine is that they fly into the path of whoever needs them. Perhaps become a source of comfort or even a go-to when you need inspiration for the week’s menu.

I have written a little bit about myself here when I started this journey. As I type this the first rain of spring is falling and it feels almost like a new beginning. And I am optimistic about a new season for these notes as well as myself.

August 17, 2020August 20, 2020

When the wrong thing is the perfect thing

The first wrong thing was a calculation problem…

Sometime during lockdown I sent the Engineer to the butchery. We support a local butcher who has always given us fantastic service. I make the list and he runs off on a hunting trip where he can do some inspiration shopping of his own, allowing him time to buy whatever looks good.

On his list are six lamb shanks. This is what the recipe calls for. When he arrives home he asks me about the weight and I pull up my shoulders. I have never done a thing with lamb shanks. He presents four to me… the size of a leg of lamb each. A well-fed lamb at that. I am not deterred. There will be leftovers, there will be sandwiches, we will love these lamb shanks. In the freezer, they go to appear on the menu a few days later. I leave them out to defrost overnight.

The Engineer who is also the chief braaier gets the night off as I start my preparations mid-afternoon. They need to be in the oven for four hours. Things need to be braised and coated and chopped. But, being bored and task less he ventures towards the kitchen where being an engineer he observes that my Agila casserole is too small for my cooking adventure. “No, they will fit if you stagger them.”, I announce pointing at the picture in the book where the food photographer did something fantastic in a casserole almost identical to mine. So we stagger… they don’t fit. To such an extent that we can only fit two. At this point, I realise that this will however feed a party of ten adults. I have never been great at calculating I have always believed that there should just be more than enough.

Exactly 3 weeks later the other two lamb shanks make their appearance on the menu. Unknowingly a lot of the recipes that appealed to me the last two weeks were Moroccan, and this one sent me in search of Turkish apricots. A fantastic recipe (also called for six lamb shanks), which I ended up using as a suggestion only, because it turns out, that I could not find all the ingredients. My version can be found here.

The second wrong thing was a purchase…

Last week found me in the doctor’s office for an ear infection (not surprising, I know). So the kind gentleman prescribes ALL the pills, basically, the whole pharmacy, warning me that the one, although a very low dosage, may have some side effects. I drink everything as prescribed on Thursday evening. I fall asleep seated in the living room. That night I have very strange dreams and although the doctor has said to take things easy, I am working from home. So that personal life work-life is not really separate at this stage. Friday morning before 9 am I have cried my way through two packets of Kleenex. I have cried my contact lenses out. I have cried into my coffee and through a Skype meeting. I have cried over a casserole that I cannot afford. At 10 am I tell my colleagues that I am taking a sick day and put myself to bed… where I cry myself to sleep. At this point, I don’t know if it was the medication or if it was just me knowing about the medication, but Friday my body told me to remove myself from public society because I was making a fool of myself. By Friday afternoon I had read three different blogs where witty 20-somethings told me how to pull myself out of my funk. Listing peppy music and a manicure. But I got the gist of it. They were referring to self-care. Which is something that has fallen off the list the last couple of weeks.

On Saturday morning the Engineer fled the atmosphere and Kleenex with the Lilliputians for their music class and I shuffled my pajama-clad self to the bathroom. I was going to (insert drumroll here) shave my legs. I was going to pluck my eyebrows and I was going to put on a facemask that I had purchased accidentally. What I thought was a face wash (I blame the COVID mask that makes my glasses fog up during shopping), turned out to be a charcoal something or other that was good for … probably peppy 20-somethings.

I was then also going to blow dry my hair and even put in my contact lenses. I was going to wear something other than my owl slippers. I was going to make an effort even though I felt like being upright deserved applause.

So the accidental facemask was the perfect thing. It made me feel… well not 20 something, but at least like I had done something different. I have to however admit that after shaving my legs I no longer felt like blow-drying my hair, and settled for a cup of coffee in the sun rather, but this too was the perfect thing. The eyebrows only got plucked on Sunday, but at least I did put in my contact lenses.

So two happy accidents taught me a few things:

Lamb shanks come in different sizes

You don’t have to have all the ingredients to cook something delicious – I believe that (and I can’t believe that I am saying this), but maybe things do not have to be planned out perfectly to work out beautifully.

If you buy the wrong face wash, try it, it may surprise you. And even it is black goop it may be exactly what you need.

Airdrying your hair while sitting in the sun is much more rewarding than blowdrying them on your bed.

It is okay to take a moment for yourself, even if you feel that there are none.

July 29, 2020

The side effect situation – isolation and monotony

Have you ever felt the need to open the pamphlet of your medication because you were experiencing something weird and wanted to see if it was one of the side effects? Usually, within two minutes you can convince yourself that you are dying. The same happens if you Google symptoms. Well, to me anyway. These last few weeks I have been on a bit of an emotional tumble and found myself, more than once, confused and disoriented. This lead to anxiety which led to a few days of being very down.

Today I, however, decided that I am allowing this no more! When looking at the symptoms of a vestibular disorder the following are listed on vestibular.org:

Vertigo and dizziness
Imbalance and spatial disorientation
Vision disturbance
Hearing changes
Cognitive and/or psychological changes

I certainly tick all the boxes. The last few days I have however especially had difficulty concentrating and just getting myself to focus.

This post is, therefore, the first effort in getting things back on track. My own way of being assertive. And also a way to admit that my side effects are also due to the situation of isolation and monotony.

All of the above symptoms are also exaggerated when one’s immune system is a little compromised and when one is tired. This time of isolation has pushed me into exhaustion. We have missed our annual mid-year break because we cannot go anywhere and both the engineer and I are working weird hours because the work is now at home and we cannot quite stop. I have also realised that the days are all the same. There is nothing to look forward to. I also believe that this realm of uncertainty is also taking its toll. Even if we were to know that there will be four more months of this… at least we could be excited about what happens after that. I am trapped in uncertainty.

It took me almost 40 years to learn that if you decide to do something and something goes wrong, that is not a reason to can the whole project. Our lives are probably made up of all the little bits of imperfection that we had to shape into something else. I, therefore, ascribe the above list of symptoms as physical symptoms exaggerated by a bit of an emotional tumble.

So today I am picking myself up and dusting my knees off. I am admitting that I have more than just stumbled but have actually fallen and am grateful that I can at least continue on the path. I paged through my notes and started looking for specific things on the better days… things that were within my power to pull myself back towards myself. These include:

Dinner planning: I have written a little about the family dinners during lockdown and have a scheduled post on the menu coming soon. We are currently on day 125 and we have had 114 unique meals (the missing days were mostly filled with leftovers). It is a simple thing to have something to look forward to.

Exercise: The engineer and I got into a very nice running schedule, which I believe is one of the plusses of lockdown. With both of us working from home we can easily fit this onto our day. On the non-running days, I try to do something else, like pilates (through Fitnessblender.com) or dancing. This has however been neglected and I realise that this is one of those things that I should just do. So on a random Wednesday, I am scheduling some exercise time for the coming week.

Socialise: Not being able to have friends and family over has been very difficult for me. I am a social animal and I miss these events that we took for granted not so long ago. Luckily in today’s day and age, there are a lot of ways to interact.

Doing something creative: One of my very close friends started a Whatsapp group at the beginning of 2018. She invited all her friends that had some creative inclinations to post on there whenever they have finished a project. This group has grown and evolved and I have been inspired by so many beautiful things and so many beautiful people. On any given Saturday you would for example see the birthday cake that someone baked for their five-year-old and also follow a conversation on the best way to get craft glue out of a carpet. Late afternoon someone may post a recipe for a cocktail and another would brag about their colouring efforts. This group is full of love and encouragement and ideas and it has taught me how important it is to do something that is not “work”. Something that pushes the boundaries of the imagination a little.

Physiotherapy: What can I say? The exercises… do them!

Read: I have to admit that in the last few weeks I have been escaping from my days by going to sleep early and not reading. And as I type this I realise that it is time for a new book.

In short… find something in the day to look forward to… even if you feel a little trapped. That way there is some movement forward… even if you feel like you are standing still. I apologise if I am repeating myself… take this as confirmation that it worked the first time too.

June 23, 2020

Recovering the satellites

The mood is currently low and slow and I am somewhat annoyed by a satellite like spinning behind my left eyebrow. I am off balance. Physically and mentally. My lists have become too long and my sleep interrupted.

When I dreamed up this conversation and the various topics, the seed was my vestibular rehabilitation therapy (VRT). Up to now, I have chatted about various emotional things but today I intend to get a little academic. Predominantly because the last few weeks have plummeted me into unhealthy old habits and I realised that my lousy mood is being fueled by some old acquaintances, that needed to be put in place. A vague spinning somewhere just out of sight and a sensation that my bed has been washed out to sea. So I dug out the worksheets and started my rehab from scratch.

So some context to my situation currently: South Africa is still in a lockdown situation where we are not allowed to socialise, go to church, go to restaurants and our schools are still closed. We cannot see our families. I cannot go to my dance classes. I am therefore still a full-time boss, full-time employee and full-time mother to the three-year-old Lilliputians. I am tired and somewhat sad and feeling guilty about everything… that I am not spending enough time with the Lilliputians when I am working, that I am not working enough when I am spending time with them, that the housework is not perfect, that the Engineer never gets to see me with makeup anymore… I am sure you can see how this can spiral!

What I can however do now that we could not do at the beginning of lockdown is run… which we do and which I am grateful for.

Bluebottle, the hearing aid, had its one year birthday in May and had to go for his annual service. The first interesting thing that the audiologist noted was that my reaction time in the hearing test was overall, a bit delayed. When compared to the graph from 2019 it was lower and slower throughout. And thus my audiologist visit turned into a bit of a therapy session as well when she pointed out, immediately, that I must be tired.

This low mood was then pulled into the depths of misery when a cold front hit and took the sunshine from our otherwise mild winter. It was cold, I was cold and the Liliiputians could not play outside. They are not made to stay indoors. That Saturday morning found me not wanting to get out of bed because I could not stand upright and I realised that something was off balance… literally – me.

The problem was first picked up by my director who is also a medical doctor and noticed that my one eye was a little slow. He did what doctors do (even though not usually in a staff meeting) and started asking all the questions. My symptoms were:

I am not going to drag you through the whole process but what I can tell you is that I felt like I was back in school and could not do the most basic of things… follow something with my eyes and I have to admit that that realization was the hardest part of all. The rehab took me through a 3-month process with daily exercises that I had to do with a stopwatch and a few sticky notes. Stupid little eye and head movements that were, initially, impossible. After feeling like a complete idiot the first two sessions I at least started to laugh at myself which was half the battle won.

That was now a year ago. A year that brought more work and home responsibility, more pressure and a lot more stress. This pandemic also brought uncertainty and interfered with my bulleted, tracked, planned out routine. All these factors plummeted me back into my original symtoms and I realised that it was time to reset a few things. Starting with the stopwatch and the sticky notes. Today is day 7. It gets worse before it gets better. Or… I hope that is what is going on anyway because the alternative is that it is just getting worse. The mood is thus low and slow and I am somewhat annoyed by a satellite like spinning behind my left eyebrow.

June 3, 2020

The relief of realisation

My grandmother on my father’s side had various sayings. I was only fortunate to know her for a few years before she passed away, and now that I am 30 years the senior of that seven-year-old girl, I wish that I had the wisdom then to write some of them down. The one that I however do remember (mostly because my mother uses it a lot) is “give it a name”. This usually refers to one feeling better by just knowing what is causing the symptoms of illness.

Time and time again I find this to be true in my own life. Not only because I do not deal well with uncertainty or unpredictability, but because I can better deal with things when I know what it is that I am dealing with. Even if the news is bad, I would rather have it than not knowing.

In my entries, I have touched upon a long road that finally led to the right people who helped me towards my diagnosis of inner ear problems and vestibular issues and I remember that when my hearing loss was finally diagnosed that I went from disappointed in an irreversible change to relief in the fact that I now knew what was causing the various problems. Regarding the secondary vestibular issues and the rehabilitation that followed, this was something that could be addressed and fixed. And it would not have been possible if it wasn’t given a name.

As the structure of my life and everything in it changes, I find that I have to review the things that I track every now and again. For example, when I started my habbit tracker, I included my alcohol consumption there, and it was only then that I realised that upon occasion this triggered other problems, because I could actually see and compare these occurances. When I researched the various methods of habit tracking the following stuck with me: “you cannot manage what you do not measure”. Simply stated that things will not just go away if you ignore it.

In June I am trying to extend my mindfulness with a mood tracker. Mostly because I want to know why some days are worse than others. I am also trying to identify triggers. By simply acknowledging that on the days that I sleep in my day is upside down, I can manage that, and at least blame myself if this does happen.

I was reminded again today of the relief of finding something that works. I think a good example of this when someone has to try various combinations of anti depressants before they find the one that does the job. My hearing aid has a zen music programme. This is something that is on the list for research and will be discussed here in-depth at some stage, but for today I realised that it also works well to block out the everyday noise allowing me to focus on important work. I have now been wearing Bluebottle for a year, and have actually only truly appreciated this feature during the lockdown period, where I am working from home amidst the noise of the Lilliputians’ war cries and the Skype meetings of the Engineer. Being focused on an actual task and being able to tick things off the list systematically also helps to cancel out the “noise” of the guilty conscience, because the day was spent moving forward.

As I am writing this I am fully aware that not all things can be changed or fixed or addressed, but I do believe that a little bit of mindfulness allows me to manage them. Here are some ways:

Avoid some triggers that cause anxiety
Prioritising time to do things that I love
Identifying the things that are productive but don’t feel like it
Acknowledging that just because I skipped a week of blogging or a day of exercise does not mean that all the effort is now null and void.
Plan… even if it just to make myself feel in control.
Do not disregard or minimise the things that you feel by making it trivial, feelings are real, and we need to move through them not ignore them.

Five bad minutes in a day does not a bad day make.